The tide
has turned on chronic pain management.
Anyone who follows the media in any capacity will have seen this shift
particularly in regards to opioid medication with regular mentions of
addiction, and the harm it can do. What
generally is getting left behind in this discussion is patients with chronic
pain and the harm untreated pain can also do.

The very few appointments I’ve had with Pain Consultants in the last few years have also had a tone change. It’s gone from a dismissive ‘there’s nothing we can do for you so you need to live with it and manage the pain as best you can with the medications you are on’, to a very similar one that includes a long lecture about the need to reduce the medications I’m on. Ah, because of the side effects? No, that’s not the reason. Because I’m abusing them? Not at all – I’ve taken the same medication at the same dose as prescribed for many years.

No
alternative is offered. I’m not told about any of the latest research or
studies on pain reduction. I’m simply
told it would be best if I reduced my pain relief. I then counter with a
question about quality of life – how am I meant to function with an incredibly
painful condition with no pain relief? It’s a question that never gets
answered.

I have been
under the same Pain Clinic since I developed chronic pain at age 15 and I’m now
in my 30s. So I have now been in
constant, crippling pain for over half my life – and in that time nothing has
changed. There have been no new treatments offered after exhausting the very
little allowed Physiotherapy and Hydrotherapy on offer. I personally spent many years and a lot of
money trying every therapy I could find – from exercise-based to stretching,
sticking needles in me, to weird off-beat ones, ones that target the mind and
many in-between. The NHS, however, has
offered the same few inadequate options.

While I’m
sure research and studies go on in the field of pain – I don’t keep up with
them at all. This may seem strange to
those without pain – but it would simply be a heartbreaking way to spend my
time. Even if there is a miraculous breakthrough, having that get through all
the trials, work for all patients with pain, be funded and offered by somewhere
I can access are all huge steps to climb.

The
judgement always feels like it’s on the patients to be doing something
differently. Self-management. How I’ve come to loathe that term. If cards were dealt to chronic pain patients
– self-management should just be one in their hand, along with Specialist
Consultant, Psychological Support, Care Needs, Equipment, Treatment Options,
Medication and I’m sure you can think of many others. What it feels like
instead is the NHS has either run out of cards to give or have taken the rest
away, so the patient gets left with one single option of self-management and
are told to like it, or lump it.

I’ve had
many of those other cards ripped away from me, but I’m still clinging on to my
medication card. I feel judged for doing so and more importantly, I feel
scared. Every time a new report comes out about opioid medication and addiction,
I wonder what the impact will be on chronic pain sufferers. Of course addiction
happens, and I’m not suggesting it’s an issue that should be ignored – but
instead it’s those of us with incurable painful conditions simply being left
out of the equation instead.

There are
such amazing advances taking place in medicine, but the knowledge we have of
both pain and pain relief still feel so basic.
How much money and research actually takes place in creating non-harmful
painkillers?

The UK
should not follow the same approach as the US that has villainised chronic pain
patients. It seems many Pain Clinics in the US now have a blanket ban on
prescribing pain relief, and will not take patients that have existing
prescriptions. For the very few that do allow medications, they will often make
patients sign a contract with them that has numerous restrictions such as
spot-check urine tests and the fact the patient is simply not allowed to take
anything other than their prescription. While it may seem reasonable on the
surface – this can include patients having to refuse pain relief after
accidents, operations or similar. People
with complex conditions can metabolise medications differently, and I’ve seen
cases where people who took what was prescribed having their prescription
revoked because their urine test either showed not enough or too much in their
system even though they were taking what they were supposed to. Other patients have had to stop taking
cannabis or CBD oils used legally that they found helpful because their contract
had a blanket ban on them.

Not only do
patients find the contracts stressful and coercive (i.e. they have to sign them
to receive any pain relief) a 2010 review also found that evidence was weak
that these contracts actually reduced misuse of medications.

I
personally believe it should be basic care to receive adequate pain relief, and when it’s treated this way the
relationship between patient and doctor simply becomes both negative and
fearful. An article in the British Medical Journal states, “One systematic
review suggested that addiction occurs in 8%–12% of individuals taking prescription
opioids, but most data in the review derive from the USA and we have no
definitive figures for European populations.” So not only are a lot of fears of
addiction coming from data in the US where the addiction rates are simply
higher, then even taking the figure from the US of 12% it still means a huge
majority are taking the medication correctly and as prescribed.

Generally
both chronic pain and Pain Clinics in the UK are an underfunded and
underresourced area. Just taking my local hospital alone five years ago the
clinic had eight full-time consultants, two pain nurses, a pain psychologist
and numerous support groups and pain management groups that were run
weekly. From that list, all that remains
is one part-time consultant. The rest have
simply vanished. Yet rates of chronic
pain patients and their needs have not gone away.

If the NHS wish
to reduce the use of painkillers they need to offer well-funded Pain Clinics
that can offer an array of services and alternatives in return. They can’t
remove both the clinics and pain relief and expect patients to just ‘get on
with it’. The result will simply cause
far more of a burden on other medical and care services as patients deteriorate,
and there will almost definitely be a massive increase in chronic pain related
suicides.

It’s sad when you get excited about a new pill holder, but there you are! I really like the colours, and the amount of boxes there are to split things up. Sometimes I find I don’t take things as often as I could, which then increases pain levels. So having it set out like this will show me if I still have more to take in a day. At the moment I’ve just got paracetamol in there, but got plenty to add. You can take each day out, so you only need to carry one section around with you at a time.

Next are two items to help my neck. The base of my neck burns hot pretty much all the time, probably from inflammation. I picked up this cool pillow pad at a mobility shop, as sometimes it’s so hot I struggle to sleep. I thought this might help, particularly in summer.

Similarly this is designed for the head, but is the right width to wrap around my neck when it’s burning to try and soothe it.

I’ve had a bit of a saga to try and get some orthotics sorted. My first referral was rejected by my GP, with a note it had to come from a consultant. It took me five months to see one, then another three months to get an appointment. So, nine months in total and I’m sitting in the orthotics office, only to say I should have been sent to the hand clinic to see a specialist! Argh! Lucky it didn’t take as long this time, just two months, and I saw them last week. Luckily they had much better ideas than the huge white plastic splint the orthotics departments had suggested – which immobilised my thumb completely.

What I needed was something that allowed my thumb to bend forward, but not backwards so I could still make jewellery. And I also needed something to provide gentle support when it was painful and inflamed. The Occupational Therapist gave me two things – a thumb splint, and some Cobon tape.

The splints are pretty subtle when they’re on, and don’t look so awful as some of them. They allow the forward movement I need, but stops the joint from hyper-extending backwards. When using my jewellery pliers it will still allow me to put the pressure on the wire I need.

So they’re my new gadgets! What do you think? Anything you think I need to buy?

I love it, but not everyone does for lots of different reasons. When you have a chronic illness or disability there can be some roadblocks to your ability to get through the season, like the cold weather ahead, services shutting down, carers taking time off and so on.

So I thought I’d put together a little survival guide with some of my tips and ideas of how to get through the festive season, and I would love you to share some of yours in the comments below.

1) Christmas Cards

When you have chronic pain, the thought of sitting and writing out a stack of cards can be a daunting prospect. Some may struggle to see what they’re writing, others may suffer from hand tremors that send their writing all over the place. If you’re anxious about cards, why not look at other options?

A traditional Christmas Card

E-cards can be a lot easier to create, and are sent by email. If you’d rather give someone a physical card, you could type out an insert to pop in with each card. (I find typing a lot easier than writing for a short period of time, and when I can’t I use Dragon Naturally Speaking to control the computer with my voice.)

Also have a look into the full range of pens out there. Some may find a thicker pen easier to hold, or an ergonomic design that slides onto your fingers to stop it shaking and give a better grip may help others. Then write a couple of cards a day, rather than sitting and doing them all at once which will help pace the activity out.

2) Gift Wrap

If you’re an online shopper, there is often a gift wrap option to save you doing it. Otherwise, it’s time to get creative. I sometimes buy a range of pretty gift bags and shredded tissue paper. I pop the gift in the bag, cover it with tissue paper and tape the top. It’s much quicker, and you don’t have to worry about neat corners and ribbons. There is also such a large range of gift bags and boxes now – including specific ones like for wine, DVDs, etc that make life a bit easier.

3) Christmas Parties

When you have limited energy, these can be a bit of a nightmare. It doesn’t mean you should miss out entirely, but perhaps just limit yourself to an hour or so, or make sure you’ve build resting time in before and after to give yourself as much energy as possible.

You could also host an alternative party by getting a selection of Christmas films in, some festive snacks and keep it low-key.

4) Watch out for the Winter Blues

Even those who aren’t formally diagnosed with depression can find the winter months difficult to get through. Many feel trapped in their houses, avoiding cold weather and icy pavements. Days go by quickly when there isn’t much light, and it can be quite isolating.

Try to make sure you continue doing things you enjoy. While the outdoors might be shut off to you, perhaps join a local crafting group, or take it in turns to have a small gathering with friends so you don’t go for long-stretches without seeing anyone. The charity Mind are suggesting you hold a Christmas Crafternoon. Find out more by following this link.

If you do find yourself struggling with the blues, remember the Samaritans are always available, and you can even email them if you find phones awkward. Sometimes just a friendly voice or email can help break up your feelings of isolation.

A different type of winter blue

5) Weather

Last year we were lucky enough in the south east to avoid the snow. This won’t always be the case though, so try and plan ahead.

I bought some thermal gloves earlier this year – as my hands tend to feel the worst of the cold, as well as some thermal socks. I checked my boots are okay, and don’t have holes in them in October, so I had time to replace them if needed. I’ve bought a blanket and a wheelchair bag so I can carry it around with me if needed, and keep one in the car.

Those with joint problems/mobility issues tend to feel the cold much quicker, and those in wheelchairs usually suffer badly – as when you’re sitting still you’re not generating natural body heat.

Look into heat packs – wheat packs are good for around the house, or Cura-Heat pain packs or similar places on the worst areas. There are also hand warmers or foot warmers to put in your shoe/gloves. There are also the clickable versions that tend to give pretty good warmth, but do need boiling before you can use them again.

Generally however, I plan not to go out as much as possible in the cold. Many pharmacies offer a repeat prescription and home delivery service, so I get my medications bought to me monthly. This saves one worry, and one trip out.

I also make use of online delivery for food shopping. Tesco were offering a Delivery Saver where you pay £30 a year and don’t pay for any mid-week delivery slots, and you also get priority over the Christmas period. Other supermarkets will probably offer similar money-saving options. Iceland now offer online delivery, whereas you used to have to go to the store and carry out the shop for them to take your shopping for you. This is a great way to get in festive food without having to face the crowds.

If you’re a fan of online shopping, always make sure to have a look for any money-saving codes, and sign-up to cashback sites such as Quidco. If you’re prefer a non-virtual experience in real shops, try and go mid-week when it’s not as busy. Try to start picking up bits throughout the year rather than panic in the last couple of weeks. This year I’ve failed however, and will be joining those panicking!

6) Ask for Help

Sometimes you really need to be honest with your loved ones about what you’ll need to get through the day. I normally go to family member’s for Christmas Day, so for me it’s more about trying to pace and saying no if needed. Usually after lunch my family goes to the crematory to pay their respects. However, I spend that time sleeping in order to get through the evening. I found it quite hard to ask for this, particularly to sleep at a family member’s house – but I had to suck it up and say that’s what I needed.

If I get invited to a party or gathering, I always try to tell them I’ll need a chair, and most will put one aside especially for me. Also try to tell people in advance what you’ll need – a quiet place to rest, or that you might need to leave early. When responding perhaps say you’ll only be able to come for an hour or so, so you don’t feel bad if you do have to leave, and if you’re able to stay longer it’s a bonus.

A friend of mine who is the host for her family at Christmas saves up to get in a cleaning company, so that’s one task off her shoulders. I also recently hosted a small gathering at my house. I knew I wouldn’t be able to be up-and-down all night offering drinks, so instead I made a Festive Punch, put out some other soft drinks, and put up a sign asking people to help themselves. They did, and it really saved me some energy and pain!

I of course know it’s not always easy, that families aren’t always supportive of your needs, and can be dismissive. There are no easy answers. Just try to be firm, and perhaps find someone to be an ally and help to advocate for you. But some people will always be that way unfortunately!

7) Stock up on pain relief

Extra activity often leads to extra pain. So make sure you have enough painkillers to last the season, if needed. Take a higher dose on Christmas Day, which may be the worst day.

Biofreeze and a wheat bag

Also have a box ready with anything else you use. A microwavable heat bag, Tigerbalm, a Pain Gone Pen, Biofreeze Spray, etc. Perhaps also book in a massage/physiotherapy appointment/chiropractic adjustment in advance for the week after Christmas if that’s what helps you, and saves having to phone around once the pain has hit, and companies are closed for the season.

8) Cooking Made Easy

If you’re the one that has to provide the Christmas meal – there are lots of short-cuts that make it easier on you.

Frozen and already prepared food is much better quality than it used to be. You can get almost everything already chopped and peeled, which will save time, as well as energy. It’s not ‘cheating’ to make use of these, and while it may work it more expensive – to me it’s definitely worth it if you can budget for it.

Make a list of times to put each item in the oven a few days before Christmas, before everything gets busy. Tape a list near the oven, and direct anyone in the kitchen at the time to make themselves useful. Set alarms on your phone so it all runs smoothly and stress doesn’t take over.

On Christmas Eve prepare everything you can – put vegetables in pans, cover in water and put the lids on.

If it’s easier on you, have a light lunch and move the main meal later on to give yourself more time.

9) Think Ahead

Bugs and colds are plentiful at this time of year, so take a trip to the pharmacy and grab a basket of essentials. Paracetamol, cough syrup/throat pastels, Lemsip, Beechams, Immodium, Milk of Magnesia, etc. The last thing you want to do if you’re stuck down is have to drag yourself out. Also have a bottle of hand santisier available to try and prevent some common bugs beforehand.

Have a list of numbers ready in case of an emergency. The local police station, the out of hours GP, emergency vet, who you’d call if your boiler breaks down, etc.

Don’t forget to pick up some batteries and light bulbs, and make sure you have a working torch to hand.

Okay, so Christmas isn’t a national emergency, but it’s always easier to be prepared. You never know when a flare up might hit, and you’ll be grateful you grabbed that extra light bulb before it happened.

A selection of medications for common winter bugs

10) Remember Others

Families that have at least one member with a disability are 30 times more likely to be living in poverty than a family without a disabled member. In the past year the number of people having to use Food Banks has trebled.

60,000 people relied on their local Food Bank to provide their Christmas meal last year, and this will have significantly increased this year.

If you can afford it, please pick up a few bits for the Food Bank – and think outside the box. The most common donations are baked beans and soup, and while they’re gratefully received – there are many more products vitally needed.

A lot of the people going to the food banks don’t have the facilities to cook from scratch, so rather than a tin of tomatoes – a complete sauce is often much easier. Anything that can be a complete meal in a can – like a stew is also helpful. Treats are very welcome – if you’re living on beans, a small packet of sweets, or some biscuits can be very welcomed and bring some normality back.

Also – many people have pets before they fall on hard times, so donations of cat/dog food are most gratefully received.

Everyone has their own coping methods, so I’d love it if you shared them in the comments as they may just give someone else an idea. Finally, my wish to you is that you have a happy and pain-free Christmas, and a better 2015 than you had this year.

My mum saw the Back Nodger on This Morning a few days ago, and told me about it. The cheapest I found it for was £22.50 on Amazon compared to the £29.99 most places had it available for. I thought it looked interesting, so purchased it.

The Nodger in its packaging.

It arrived today and looks… different to most other massagers! It works by targeting trigger points and allows you to put focused pressure on it. I suffer greatly from very painful trigger points, particularly in my neck, shoulders and lower back.

You push the curved side into your trigger point using the handle. It has a ‘Locator Spot’ which digs into the muscle.

I’ve spent some time trying it out in various tight knots. It works best on my neck, where it’s easier to move around to get the right angle. Similarly, it also does a very good job on my upper back/back of my shoulder blades, and it worked on my arms – but was much more painful than other areas. I didn’t find it at all helpful on my lower back, so I’ll stick to using a tennis ball there!

The end would be quite nice in my lower back – if only I could reach!

All in all – I’m glad I bought it, as it works better than anything else I’ve tried for my neck – and it’s strangely addicting searching for the next painful spot to work on! It will also work nicely in conjuction with my favourite deep tissue massager by Dr Graeme that I find too strong for my neck, and hard to reach the back of my shoulders.

I have pain all over the place, but ranking at the top of the list is my lower back. I’d previously had facet joint injections in my neck and shoulders some years ago, but they didn’t help. However, it was before I’d had an MRI (as it took around 8 years of arguing to get one) and so the consultant was ‘guessing’ at what the issues were. Later on the MRI did clearly show an area in my lower back that had degenerative lumbar disease in the facet joints, arthritis, and others issues. It made a much better target for injections than anywhere else, so I thought it was worth a try.

It took another few years of me arguing for them (nothing ever just seems to just happen on the NHS!) After getting nowhere locally, my Ehlers-Danlos specialist at the Royal National Orthopaedic Hospital at Stanmore sent me to see her Pain Management college, who gave me the go-ahead for bilateral lumbar facet joints at L4/L5 and L5/S1 (so four in total).

A few days passed after being told I could have them and suddenly I thought – what the hell am I doing fighting to have needles put into my spine?! I was sedated during my previous injections, but I did have some memories of the procedure. I remember my consciousness kind of returning and thinking ‘please stop now.’ I was later told the sedation didn’t actually knock you out, but simply wiped your memory – and that you would be aware of what was happening as they did it. This memory built up in my mind until I was convinced I’d be strapped down with horrible painful injections into the middle of my spine, then I’d just forget afterwards so I didn’t realise how awful it would be. So I was about 500 times more nervous for these injections than previously.

The whole topic became a ‘do not discuss’ subject. As soon as I thought about it I went into a state of panic, so there was no research done as I normally would, and I didn’t even allow my mum (who accompanied me) to talk about our arrangements of getting there until the day before. I just wanted to block it totally from my mind.

We travelled to Stanmore the day before for two reasons. The first that I can’t make the journey there and back in one day, and the second was that my admission time was 7am. Ugh!

Although I wasn’t having general anaesthetic, I was told not eat after midnight, and no drinking after 6am. It was the latter I’d struggle with as I’m constantly thirsty.

I arrived at the hospital a couple of minutes before 7am and had a choice of parking for the first time ever! When we reached admissions there were a few people waiting outside, but when the queue got the doorway I realised the room was packed with both people queuing, and waiting in the chairs. It wasn’t the easiest getting my wheelchair in and out with no room for manoeuvring. There was only one member of staff dealing with everyone. The older lady in front of me didn’t speak any English, and was soon joined by an interpreter. The staff member made a phone call and I heard him say, “Are the wards still closed, there are a lot of patients here?” He then informed the interpreter they had a bit of a wait ahead. I was next, and was told the same thing.

I was a little cross, only because getting somewhere for 7am isn’t very easy for me and more importantly 7am = grumpiness! I did later found out the wards were opening for the first time after being closed for two weeks over Christmas – so I assume the delay isn’t normal.

I reached the ward and was met with a number of friendly nurses and health care assistants who welcomed me, and showed me my bed. The lady with the interpreter was in the bed opposite me. A nurse admitted me with a huge pile of paperwork, most of which seemed irrelevant in my case! I was asked a couple of times if I had any allergies. She then took swabs for MRSA and then took my blood pressure (which I hate, as it’s very painful. The muscles in my upper arm are very tight and particularly sensitive). I was told I was third in the queue – and the doctor would be seeing me beforehand.

A couple of other patients got in the bed and went to sleep, which seemed like a good idea – and would also make the time pass. However every time I was about to drift off I was woken by someone. The first to measure me for pressure stockings, then again to tell me I didn’t need them. Then a doctor who was working with my consultant arrived to explain the procedure. I was glad it was her and not my consultant as she was much warmer than my consultant is, which helped. She spent a lot of time explaining how much time they took to sterilise everything to reduce any chance of infection. I wanted to rudely interrupt and say that at that point, I didn’t care – I just wanted her to promise she’d knock me out! She then went through the possible risks – infection, numbness in the legs, pain flaring up afterwards and in a very tiny amount of cases nerve damage. She asked if I had any allergies.

Finally I could ask the one thing I wanted to know.

“You will be sedating me, right?”

“Did you ask for it before?”

“Yes,” I emphasised.

“Then we will.”

“Will I know what’s happening?”

“Well, some people do sleep.”

“Please make that happen with me. Please.”

Then the pharmacist came to take note of my list of medications, and asked whether I had any allergies, then a number of nurses came to tell me, “It won’t be much longer.” Then that they were on their way for me, only to still be there sometime later!

Eventually the porters did arrive and wheeled me into theatre. A nurse went through the final questions – checking I knew what procedure I was having, if I’d had any before, if I had any allergies and if it was definitely my signature on the consent form. The nice doctor then fitted the cannula into my hand, before I lay down front-first on the table. They put an oxygen mask on me, a clip onto my finger to measure oxygen (I’m sure that has a proper name) then to my annoyance – a blood pressure cuff which I was told would be taking my blood pressure every few minutes. It took it twice, before I told the nurse how painful it was. “No problem,” she told me cheerfully, and moved it onto my leg instead which was much better. She then began chatting to me about my hobbies and jewellery making, before my consultant began putting the sanitising fluids on my back. The nice doctor then began to input two injections of sedation into the cannula. I closed my eyes – trying to relax. She then asked if I could still hear her, and I said yes. She thought I’d gone to sleep, and I said I hadn’t felt any sedation yet. She said she’d keep going, and added two more tubes.

The next thing I remember is feeling a bit of pain in my back, and a nurse telling me it was all over. I definitely hadn’t been aware of it. I was taken into recovery for awhile, still very sleepy and groggy. A nurse chatted to me for awhile, and I remember telling her to say thank you to the nurses, as they’d calmed me down a lot beforehand. She promised she would. She then asked if I knew which ward I’d been in.

“It began with J…” I answered.

“Jackson Burrows is the only ward beginning with J.”

“No, it wasn’t that. Was it Diane something?”

“I guess now wasn’t the best time to test your memory?” she laughed. She then came back and said that unfortunately they’d moved me to Margaret Harte Ward. I began to worry if anyone had told my mum as I knew she was planning on getting a cup of tea while I was in the theatre (as she’d very kindly not eaten/drunk anything in front of me while I couldn’t).

As the porters wheeled me out of recovery, the nurse suddenly called for them to stop. She dug through a cupboard, and pulled out another blanket to put around me. “Sorry,” she said to the porters. “I just didn’t want her to get cold on the way back.”

When we got back to the ward I spotted my mum very quickly and realised it was the ward I’d been in all along! The nurse handed over to the ward nurse, and said that my blood pressure had risen quite a bit during the procedure, so they needed to keep an eye on it. Argh, more blood pressure checks!

I was left to sleep for a bit as I slowly came round. A nurse then came round to do the blood pressure test. I admit I groaned, and said the test was hurting quite a bit, then of course after gritting my teeth the machine malfunctioned. Just one more time, I was told. Luckily it was back to normal, and as she took the cuff off she realised lots of red marks had come up all the way round (which are still there today!). She gave me an apologetic pat. I asked if she could take my cannula out as it was pulling quite a bit. She took a look and said it was quite red, and that someone would do it before I left. (Well, one would hope so!)

I was told to stay until lunch time, and then I would be discharged. The nice nurse who admitted me then walked past and so I asked her about the cannula, and she said no problem and took it out. She also checked my ‘wounds’ (just slightly larger than needle marks) and said she was happy with how they looked.

Still waiting opposite me was the older lady with the interpreter. I heard a nurse say to her that her operation wasn’t going to be until mid-afternoon – yet she’d been admitted at 7am! It seemed mean to make her wait so long, and I assume the NHS had paid extra for the interpreter when they could had admitted her at the 11am or 2pm admission times. I noticed the little old lady chatted non-stop to her interpreter, which made me smile as I could just imagine in the 7+ hours the interpreter sat with her she got to hear her entire life story.

I left at 1:40pm, slept all the way home, slept all afternoon and very unusually for me – all night!

So all in all – it wasn’t nearly as bad as I dreaded. The staff – particularly the nurses, were lovely. There were lots of touches of kindness, like the nurse in the theatre distracting me from my nerves, the recovery nurse chatting to me as I came round and making sure I was warm, and the staff back on the ward who took care of me and offered me toast and regular drinks when I came round. They all made it a much easier experience. Also – the NHS really, really want to know if you have any allergies.

I’m in a lot of pain now which feels different to my usual pain. I was warned I may flare up, particularly where the needle touches the bone – so I’ve no idea if it worked yet. I think I need to wait for all of that to calm down over the next couple of days before I can tell if it helped.